Heartbreaking story documents wife's journey into the depths of dementia
ROD Pearse had two passions in life — his pigeons and his wife.
But in 2007, the pigeon racer’s life began to unravel. His wife Valerie was diagnosed with frontotemporal dementia at the age of 59.
The change in her was gradual. First, she forgot her son Andrew’s birthdays. Then, she started to become detached and lose empathy with people.
When her other son, Lee, bought a house, he called her to give her the news, but she reacted with an unenthusiastic ‘oh’.
Her behaviour then became increasingly erratic. She tried to reverse her car on the motorway, drove on the pavement and lost her job.
In a heartbreaking documentary — My Name Is Rod — Lee tells his father’s story and reveals the painful reality of caring for someone with dementia. Tragically, Rod died just six weeks after filming finished.
Lee said: “My brother and I helped dad care for her at home initially. But it was heartbreaking to see mum slowly become the shadow of the lovely, vibrant woman we knew.
“I felt furious and frustrated that this was happening to my family and wanted to scream to the world and let everyone know the truth about frontotemporal dementia.
“I realised I could do that through film and with the endorsement of Alzheimer’s Research UK, I set about turning that idea into a reality.
“Sadly, six weeks after shooting the documentary our dad died. Andrew and I were devastated, but our first concern had to be for mum.
“We told her what had happened but we don’t know if she understood. She needed help with everything by then, washing, dressing, feeding — it was a round-the-clock job.”
The 40-year-old lived with his family in Bolton when he was growing up.
He has since moved to Sheffield where he works at the inner city charity Heeley City Farm.
His film, which was shot in 2010, captures his father’s character and love for his wife, Valerie, and unravels the reality of caring for someone as their personality and behaviour changes with dementia.
Lee has now been made a Champion of Alzheimer’s Research UK, and has also written a blog for the charity.
He added: “I’ve learnt a great deal about mum’s illness over the years and how the frontal lobes regulate things like personality, emotions, reasoning and decision-making. It’s helped me to understand the huge changes in her behaviour.
"But I still feel distraught about what’s happened to her, and angry that there’s not enough funding for research to find new treatments or to support creative work to help raise awareness.
“I’m proud to be doing something to help combat dementia and I’m honoured to be made a Champion of Alzheimer’s Research UK.”
Rebecca Wood, chief executive of Alzheimer’s Research UK, said: “We are delighted to make Lee a Champion of Alzheimer’s Research UK. He has shown such enthusiasm in his support for the charity and truly deserves this honour.
“Lee is always willing to help us make the case for research and has increased awareness of frontotemporal dementia, which, although quite rare, is the second most common cause of dementia in people under the age of 65.
"This is our way of showing our appreciation for Lee’s hard work and dedication.
"There are thousands of people across the UK living with dementia, including more than 2,600 people in Bolton.
"We rely on public donations to fund our crucial research and it’s thanks to the commitment of people like Lee that we are able to continue our pioneering work.”
Lee’s story in his own words
IT has been heartbreaking seeing Mum slowly become the shadow of the lovely, vibrant lady we knew. The realisation that she was ill was gradual.
A loving, family-focused lady, she started to become detached and lose empathy.
Mum had a history of depression and at first we thought that might be the problem, but her behaviour became increasingly erratic.
My latest production is a 60-minute documentary entitled My Name is Rod, made with the dedication and support of two good friends — Ant Graham, a film producer and Leon Lockley, who is a cinematographer.
It’s a self-funded feature documentary that follows my dad Rod and how he cared for mum. The film shows the reality of how he coped as her personality and behaviour changed as dementia took hold.
It’s a tribute to him. It’s also a tribute to mum who now needs 24-hour care.
I’m proud to support Alzheimer’s Research UK and I hope more people will join me in doing so — research is the only way we can get to the root of the problem.
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